Hey, after fighting with the nhs for 2 years I'm finally going to the liver clinic on Monday to see what's going on. I had my gall bladder removed few years ago and been having endless problems ever since. This time past year liver blood result was very abnormal but consultant said it was false lab result a year on after a new gp doing specific liver test and sending me for ultrasound they have decided it may be an auto-immune system disease of my liver, but aren't sure. I'm going to liver clinic for the first time on Monday and really just looking for any advice, if there's any questions I should ask, anything I should push for etc. hope everyone is all doing ok, big hugs Kirsty xx

18 Replies

Hi. Good luck on Monday. I would say the first advice I would give is to take a good friend with you - two pairs of ears are much better than one. Prepare before you go and write a lst of all your questions, and do not leave the consultation room before they have been answered. You might want to know such things as whether you will get a copy of the letter which goes to your GP, what further tests will need doing, what are the implications of the test results you have had so far, is there a specialist nurse servive you can make use of. Do nto be afraid to take notes. The actual questions to ask are personal to you, but do plan ahead!

Hey gamesmaker, thank you so much. Yeah my mum is coming with me, I learnt the hard way going on my own before. Thank you so much, your reply has been so helpful. It's great to know someone with experience so I don't get caught out. Kirsty xx

Hey Carmick, thank you so much for your reply really appreciated. I have had nothing but problems with the nhs and finally a new gp has had totally different view on things and has done more in 3 months than I've had done in 2 years despite being back at the docs month after month. I will be back to let you know how I get on. Kirsty xx

Hi Kirsty, having just been diagnosed myself, and found a wonderful hematologist, one suggestion stay if possible with someone you've built a good relationship. I was taken in after collapsing during the diagnoses stage the day after admission I was being assessed by a doctor who was not part of the team which I had been under for several weeks, the next day a nurse from the alcohol dependency team turned up, it appeared one of the people I'd been assessed by in A&E (I presume) had written alcoholic on my notes etc ( I drink so infrequently I might as well have been tea total ) therefore at present I am fighting to have this removed from my records because of the chance I am treated in the future as a alcoholic . Therefore be aware of what the questions are asking but also the hidden questions when the doctors are not trained to ask [open questions] do not walk away with any lingering doubts about the manner and inference in the way you are treated. Best of luck as it took gallstones, cirrhosis and another prognoses (which I've forgotten the name for) prior to AIH being put on the list although my blood count for jaundice was above 1300+???? Nowhere near normal by well over a1000

Hey Holly, thank you got your reply. Aw that's so not right!! They shouldn't get away with doing that. Surely if they have put such a big mislabelling on your file they would be quick to remove it as you could easily sue them. Can I ask, what are your symptoms? Please only answer if your comfortable to. Kirsty xx

This is just to remind anybody out there who is unhappy at the diagnosis for their liver problems, especially if it is classed as caused by "alcohol" and you hardly drink. Ask to be tested for ALPHA 1 ANTI TRYPSIN DEFICIENCY.

This has always been classed as a rare disease but it is NOT RARE but UNDIAGNOSED.

It just involves a quick blood test. Mike was tested for this as we were adamant that as an LGV Driver he did not drink. It also causes lung problems.

Hi Cityman62, thank you for your reply. I really can't believe what doctors can get away with especially labeling patients wrongly. Do you know if you can ask them to do blood test to check for hep c or do they have to decide off their own back to test for it? Kirsty

Hi,Kirsty,just to say,if you have ever given,received blood,injected drugs,snorted drugs,Been tattooed,also its possible to receive it via birth, and via sex too,(tho the last two are unlikely),if you are unlucky enough to have it,alcohol even moderately, intensifies its damage hugely,hence Docs flagging up drink problems rather than the primary cause!ask for a liver fibro scan to assess any damage,(whatever the cause. Of your problems,hope this helps,good luck.

Hey, sorry to ask so many questions would hep c be picked up on blood tests I have had lots of blood tests and ultrasound. Going for biopsy on Friday to see if its fatty liver or auto-immune disease all a foreign language to me haha. I dont know what it all means. I don't drink alcohol never have became ill with my gall bladder out before I was 17 so doubt in total I have drank a bottle of wine haha. Kirsty

I doubt they will look for it routinely,unless you flag up any of the possible causes I outlined earlier,a fibroscan is Much better/immediate/less invasive/ more accurate,with no risk of infection than a crude biopsy,best,Andrew.

Hi Andrew, thanks for getting back to me. Unless I got it at birth none of the others things you said would apply. I had immunizations against hepatitis when I was at uni doing nursing but can't remember what form they protect against will need to look out the paperwork. Thank you for helping Kirsty

that sounds good,ultrasound scan will reveal any swelling,enlargement of liver+spleen too,a liver biopsy (in my opinion) is hardly a definitive snapshot of a v.large organ, a fibroscan sends sound waves through the entire organ and measures its 'hardness' I.e.,the amount of fibrosis-the stage before cirrhosis. Do ask lots of questions!

Hi, mum has recently been diagnosed with Alpha 1 and was diagnosed with auto immune hepatitis, and ovarian cancer first (although she had a full hysterectomy and no ovaries!) before banging on the doctors door for over 18 months. My advice is to trust your gut feeling. If it doesn't sound right or not your symptoms ( often they will say you must be one of the few that don't suffer from x y and z ) challenge it.